How I’ve Learned to Live a Normal Life with Crohn’s Disease

This article is the first time I’ve spoken or written about having Crohn’s Disease to anyone other than my doctors and the support group I attend. I’ve spoken openly about having Chronic Fatigue and Immune Dysfunction Syndrome, Fibromyalgia, and even about clinical depression. So why not Crohn’s? Maybe because it’s mostly a bowel disease, and I was raised in a family where all bathroom functions were avoided in conversation; they were considered private, and to some degree that has stuck with me.

Maybe because my father died in part from intestinal cancer, and if I admit I have an illness that can make me more likely to have intestinal cancer than people who don’t have it, I’ll get it (yes, it sounds silly – but women with a family history of breast cancer often do the same kind of thing). Maybe because it’s just plain embarrassing. But it’s a serious illness that affects over 500,000 people in this country, according to the CDC, and one that can be a precursor of cancer, so maybe now is the time for an open discussion.

Crohn’s Disease (CD) is one of two major chronic inflammatory diseases that affect the digestive system; the other is ulcerative colitis. The two of them are both Inflammatory Bowel Diseases, or IBD. While ulcerative colitis affects only the colon, Crohn’s can affect everything from the anus to the mouth, although it mostly manifests in the large and small intestines. It is named, as many illnesses are, after the doctor who first defined it.

Although the cause of Crohn’s is unknown, it may be in part hereditary. A gene called NOD2 has been identified as being associated with Crohn’s, and first degree relatives (parents, children, brothers and sisters) of Crohn’s disease are more likely to have it than the general population. One of my sisters has colitis, and her doctors are watching it closely in case it develops into Crohn’s or ulcerative colitis.

I was diagnosed with Crohn’s Disease as I was being tested in the fall of 1983 for an intestinal disorder I’d contracted during a summer spent in Jordan. Amoebic dysentery had caused most of my gastro-intestinal misery while I was in Jordan, and it was treated, and ultimately cured, with antibiotics. The Crohn’s disease was probably not caused by the dysentery; the actual cause of CD is unknown.

My doctors at that time felt that the CD had probably been a pre-existing condition, manifesting like Irritable Bowel Syndrome, a less-inflammatory and easier to treat condition that I’d had for a few years, but was exacerbated by the amoebic dysentery. That was the first time I’d had a colonoscopy, which allowed for the diagnosis of Crohn’s, but it certainly wasn’t the last.

My early symptoms were frequent diarrhea, which I could associate in some cases with specific foods, like apple peel, celery, and cabbage, but which in other cases seemed to have no obvious cause, and nausea. They made driving any distance impossible, unless I knew there were plenty of places for a “rest stop” on the way. The first thing I would do when entering a restaurant, shopping center, or even one store, was to scope out the bathrooms, so I’d know where to go if I needed to in a hurry.

My hiking became almost a thing of the past, and that trip to Jordan was the last archaeological dig I worked on. The diarrhea was generally preceded and accompanied by severe abdominal cramping. Back then, some of the newer medicines I mention below, like Remicade, weren’t available; I used prescription lomotil, an anti-diarrheal, and good old Pepto-Bismol (R) for what relief they could provide. Later, Immodium became available, and at this point I can still use it for most diarrhea episodes.

When I was diagnosed, the Crohn’s disease had caused small erosions on the inside surfaces of my intestines, called “aphthous ulcers” by my doctors. Over time, even with treatment, these erosions have deepened into “true” ulcers, with some scarring, and my small intestine has narrowed.

Some researchers believe that CD is caused by bacteria, but no conclusive evidence has been found linking the cause to infections. Because the ulcers can spread, however, they can cause infections to other nearby organs. This means that one of the treatments for me, and others with CD, is periodic courses of anti-biotics, to stop the spread of infection before it can damage other organs.

One of the problems caused by CD is activation of the immune system. The immune system is supposed to react to “strangers” in the body, such as bacteria and viruses, but with CD the immune system just acts, causing inflammation in the intestines. The inflammation leads to swelling, which further narrows the small intestine, and increases the ulceration process. That leads to a second course of treatment: corticosteroids to reduce inflammation.

As the severity of my own Crohn’s has increased, I’ve been put on a daily dose of prednisolone, one of several steroids used to treat CD. There is no known cure for CD yet, but as the title of this article indicates, it can be managed.

Crohn’s disease, like many auto-immune diseases, is a relapsing/remitting illness. That means that some of the time I feel better, and have few symptoms. At other times I relapse, and have more, and more serious, symptoms. Some of the symptoms of Crohn’s disease that I’ve had, and still have to varying degrees, are abdominal pain, abdominal distension, nausea, vomiting, diarrhea, rectal pain, swelling of the anal sphincter (the muscle at the end of the colon), and inflammation of the small intestine, also called Crohn’s enteritis.

Other possible symptoms, ones that I haven’t had but watch for, are poor appetite, fever, night sweats, rectal bleeding bloody diarrhea, anal fistulae (a sort of tunnel between the anus or rectum and the skin surrounding the anus), and peri-rectal abscesses. If you have diarrhea that persists for more than two days, or any bloody diarrhea, you should see your doctor immediately, as this can be a sign of IBD or something even more serious. Abdominal pain or rectal pain that lasts for more than three days are also indicators of potentially serious illness, and should be treated immediately.

When I was diagnosed with Crohn’s disease, I was given a colonoscopy, in which the entire colon is examined with a lighted scope, or viewing instrument. Most people under 50 haven’t had a colonoscopy, but may have had a sigmoidoscopy, which looks at just the first two feet of the colon. I also had X-rays using a barium enema, which allows more of the intestinal tract to be viewed. More recently, I’ve had both an MRI (Magnetic Resonance Imaging) and a CT scan (computerized tomography), newer diagnostic tests that allow a clearer view of soft tissue.

These two tests were done to determine the extent of my colitis and enteritis, and to see if anything more serious had developed. I have stool samples examined twice a year; they look for blood, bacteria, or the presence of white blood cells. If you are first being diagnosed, they will also look for parasites, which are a possible cause of the same symptoms; stool examination was one of the tests that identified the presence of amoebas in my system back in 1983.

Twice since being diagnosed with Crohn’s I’ve had biopsies taken during colonoscopies to be examined for cancer; the test is painless because I’m already under anesthetic for the colonoscopy. The worst part of the colonoscopy are the days before it is done, when I have to take medication to clear my system of everything that might be in it, so I have serious and uncontrollable diarrhea for at least a day and a half, while taking in only fluids.

Those days I am definitely at home, and unable to leave. Don’t let that discomfort stop you if you have persistent symptoms, though; it’s much more comfortable to have a colonoscopy than it is to die of colon cancer.

Other tests that may be done during the initial diagnosis are blood tests and urinalysis. They check for anemia, which can result from intestinal bleeding, inflammation from an over-active immune system, or malnutrition, which can result from the inability of your colon to absorb nutrients from the food you eat.

I’ve already said that I take a daily dose of prednisolone, a corticosteriod which reduces inflammation. There are side effects from long-term use of steroids, which include “moon face” or swelling and rounding of the face (and it isn’t pretty), acne (I’ve mostly been free of that), increased body hair, diabetes, weight gain, high blood pressure, cataracts, glaucoma, muscle weakness, irritability, depression, fatigue, insomnia, and thinning of the bones. I am currently on a low-dose, and stop taking it when I can. I also am annually tested for diabetes and glaucoma, and monthly tested for high blood pressure. Since all three of those conditions are in part hereditary and already exist in my family, they are a concern for me.

I also have taken anti-biotics, including Flagyl (the brand name for metronidazole) and Cipro (ciprofloxacin), both of which are used for the infections that can be caused by Crohn’s disease. I haven’t had to take them for extended periods of time. That’s a good thing, because Flagyl, taken over a long period of time, can result in damage to the peripheral nerves.

Other medications used are 5-ASA compounds, anti-inflammatory drugs which are similar to aspirin (aspirin itself can make Crohn’s disease worse) and immuno-modulators like Imuran (azathioprine) and infliximab (Remicade), which reduce the number of immune cells. Because of the side effects of steroids, some patients are better off with 5-ASA compounds than drugs like the Prednisolone I take; drugs like Remicade, which interfere with the immune system, can increase the risk of infections, but when your Crohn’s disease is moderate to severe, the benefits (like far less diarrhea) can outweigh the risks, as long as you watch closely for infection.

So, other than medication, what do I do to live a reasonably normal life? First, I eat several small meals a day instead of two or three larger ones. With less food in my intestinal tract at a time, there is less likely to be blockage of my small intestine, and that means less cramping, less abdominal distension, and less diarrhea. I’ve also kept a food journal since I was diagnosed: I now know what foods make me worse, and what doesn’t irritate my digestive system, and eat accordingly.

I don’t smoke, and I avoid alcohol; both those things make my symptoms worse. I get regular exercise; for me, that means daily walks with my dogs. Because I have other health problems, the walks aren’t always the hour that is my goal time, but any exercise, especially done outdoors, helps to reduce fatigue (that may seem counter-intuitive, but it works), and helps me to sleep better at night.

I drink lots of fluids – mainly purified water. Crohn’s can cause dehydration, and drinking more fluids prevents that. I drink more in hot weather than in cold. Despite the heart-benefits of a high-fiber diet, I stick to a lower fiber diet, and eat only types of fiber that I’ve learned my body can handle without “complaint;” these are mainly soluble fibers like oatmeal, because insoluble fiber like that in apple peel and celery worsen my diarrhea. I’m on an anti-depressant; my depression may be partly caused by Crohn’s, and partly by the daily use of a cortico-steroid, but it is very real (there is also a history of depression in my family, which makes it more likely that it is not connected to Crohn’s) and with an anti-depressant, I function better.

They aren’t “happy pills,” although I wish they were; they simply make me able to cope with the stresses in my life. I go to monthly meetings of a Crohn’s support group held at one of the hospitals in my town. I take all my medications as prescribed, and when my diarrhea symptoms get worse, I use an OTC anti-diarrheal like Immodium. If I travel, I make sure to have enough of my medications and my OTC medications with me, and keep the phone number of my gastro-enterologist in my purse.

The most important thing that I’ve done for myself is to educate myself about the disease, because knowledge is power. I understand what my doctors are talking about because I’ve studied it, and I’m not afraid to ask questions about everything. I know there will come a time when I may need more medications, like Remacade or a 5-ASA compound, and I’ve read about those as well. My illness is in a “remission” phase right now, but I know that can change. Using the things I’ve described above, I can go out, leave my house, without fearing that I’ll need to race to a restroom every five minutes.

Before I developed Chronic Fatigue and Immune Dysfunction Syndrome (see my AC article, “Living with Chronic Fatigue and Immune Dysfunction Syndrome and Fibromyalgia”) I was able to return to hiking, and leave bathrooms behind for several hours at a stretch — on most days. My diarrhea is under control, which doesn’t mean I never have it; as long as I’m careful about what and how I eat, it’s infrequent and controllable with OTC meds. I have some abdominal cramping, but it isn’t as usually as severe as it used to be. I can eat in a restaurant because I know what will make me sick and what won’t. The medication I take keeps the inflammation, or “-itis” in my intestines and colon from blocking my intestines. I can do pretty much everything that someone without IBD can do.

If you have Crohn’s disease and want to find a support group or a Dr. in Fort Pierce, check with your local hospital or with the Crohn’s and Colitis Foundation of America (CCFA). If you suspect that you may have the illness, go to the CCFA and read about it, and see your doctor. Make sure you take a list of all your symptoms and all your questions, because it’s easy to forget things in a doctor’s office. If you do have an IBD, whether it’s Crohn’s or Ulcerative Colitis, learn everything you can about it, and take charge of your life. You, too, can live a full life with this illness.


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